Cancer Survivors Network - Comments for "RCC Chromophobe"http://csn.cancer.org/node/196116
Comments for "RCC Chromophobe"en-csnchRCChttp://csn.cancer.org/comment/1554047#comment-1554047
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<p><em>In reply to <a href="http://csn.cancer.org/comment/873768#comment-873768">RCC</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>I just recently had a Left robotic partial nephrectomy in August. My tumor size was 2.3 chRCC. The surgeon stated that is was a slow grade cancer. However no grading was on the report. What makes it a Grade 2 stage? How are you feeling now? </p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Fri, 16 Sep 2016 13:03:32 +0000Jimmy1925comment 1554047 at http://csn.cancer.orgscanshttp://csn.cancer.org/comment/1428238#comment-1428238
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1428195#comment-1428195">Could be</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Tomorrow morning</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Fri, 10 Jan 2014 01:40:37 +0000RebeccaBenoitcomment 1428238 at http://csn.cancer.orgCould behttp://csn.cancer.org/comment/1428195#comment-1428195
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1428174#comment-1428174">Chromophobe</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Rebecca, it is premature to speculate on what it could be. When is your scan? Good luck. I hope it is soon.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Thu, 09 Jan 2014 22:35:15 +0000foxhdcomment 1428195 at http://csn.cancer.orgChromophobehttp://csn.cancer.org/comment/1428174#comment-1428174
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<p><em>In reply to <a href="http://csn.cancer.org/node/196116">RCC Chromophobe</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>10cm, left kidney. Radical open nephrectomy, adrenal gland left. Clear margins. So stage II, Grade 3.</p>
<p> </p>
<p>I am two years post op, last scans in April. Recently discovered that my left ribs (same side as the surgery) are easily twice the size of the right, and slightly sore.</p>
<p> </p>
<p>I'm having both an abdominal CT as well as a chest.</p>
<p> </p>
<p>Could this be mets to the ribs? Spleen? Anyone have this NOT be a reoccurence?</p>
<p> </p>
<p>I have the worst scanxiety!</p>
<p> </p>
<p>Oh, I am 34. I was 32 (F) at diagnosis, and who KNOWS how long I had, had it for before the incidental finding.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Thu, 09 Jan 2014 20:33:18 +0000RebeccaBenoitcomment 1428174 at http://csn.cancer.orgshoulder painhttp://csn.cancer.org/comment/1359300#comment-1359300
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1358967#comment-1358967">new diagnosis not sure what to think</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hi Keith,</p>
<p> I had a radical rt nephrectomy 11-1-11 laproscopic and partial open. Initially my scans revealed it had metasticized only to my lungs. In late March 2012, I began developing pain in my rt. shoulder that rapidly grew worse. I was scheduled for an MRI thinking it may be a rotator cuff issue. My oncologist ordered a CT scan of my shoulder prior to my MRI which revealed a tumor in my rt. scapula. I would urge you to ask your doctor to have the area scanned. Good luck !</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Mon, 15 Apr 2013 23:49:27 +0000one puttcomment 1359300 at http://csn.cancer.orgInformed advicehttp://csn.cancer.org/comment/1359023#comment-1359023
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1358967#comment-1358967">new diagnosis not sure what to think</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Keith, there are a few members here who may be able to pass useful comments (alas, that doesn't include me) but no-one with anything like the expertise of your doctor at Bethesda - presumably you are seeing a top RCC/prostate medical oncologist? Yours is an unusual situation and there's unlikely to be anyone here with deep knowledge of the relevant issues. </p>
<p>Have either you or Judy joined Smart Patients (the successor in the making to ACOR's KIDNEY_ONC) where you should be able to tap into a range of professional opinions?</p>
<p>Have you pressed your doc for a thorough explanation of why watch and wait is being recommended for the kidney problems? Perhaps the thought is that the prostate dx is more urgent to tackle than the kidneys. Oncocytoma must be a better dx than RCC and if you had the closely related chRCC in only one instance, small, and now removed, the prospect of metastasis seems fairly remote (I guess the statistical probability of concordance is high enough that they presume all contralateral tumors will be oncocytomas and therefore not too worrying). </p>
<p>CSN here also has a prostate cancer forum - have you looked over there? Prostate is a cancer where there's been much better advance in treatment than in kc, which is also encouraging. <br /></p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Mon, 15 Apr 2013 02:54:58 +0000Texas_wedgecomment 1359023 at http://csn.cancer.orgnew diagnosis not sure what to thinkhttp://csn.cancer.org/comment/1358967#comment-1358967
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<p><em>In reply to <a href="http://csn.cancer.org/node/196116">RCC Chromophobe</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hi Folks.</p>
<p>After reading some of your stories---I am a bit more concerned about my situation. First let me say I am sorry you are all experiencing this health crisis too!! I am wondering if anyone here has any suggestion for me about waiting for scans annually VS every 6 mo??? I just returned from National Institute of Health (NIH) from post Neph surgery follow up. My HX- incidental finding multifocal bilateral masses 9/12. I had 15 tumors --2- 8cm, a couple 6cm, some 4cm-one in the renal pelvis, and smattering of lesser sized ones removed from the left on 1/8/13. My current creatnine is 1.58-amazing!! I have 8 tumors in the right, 3 of which are 8cm plus. I was told that 14 of the 15 tumors taken from the left are Oncocytomas and that one was "marked nuclear atypia with focal extension into the fat" the doctor telling me this said probably some hybrid Chromophobe but that the "team was stumpped" as to what it really is. He also said what I presented with is incredably rare but I will die with it and not because of it. I am 62. The surgeons have decided that because bilateral masses are usually 'concordant"-- what's in one side is in the other-- they will do active surviellence annually on the right and not remove it as origianlly planned. </p>
<p>Reading this site I can see that while chromophobe is low grade and slow growing it seems that it can and does spread and reappear in partial Neph. So what is concerning is why would this doctor have such a casual conversation with me about the risk??? I left very happy and feeling I would not have any other problems with my Kidney's!! Now I am not so sure.</p>
<p>I was also just DX on 3/18 with prostate cancer- gleason 9 --6 of 12 cores 7+. I have a persistant pain in my scapular (the reason I found the kideny masses back in September) which has never been imaged or scanned--I was told it is muscular skeletal pain and not to worry. The same doctor that shared the above kidney pathology news is handling my prostate problem soIi am hoping he will order a bone scan and not be so casual about the prostate problem.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Sun, 14 Apr 2013 23:48:29 +0000keithafroehlichsrcomment 1358967 at http://csn.cancer.orgAvastin + Afinitorhttp://csn.cancer.org/comment/1357743#comment-1357743
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1357729#comment-1357729">Hi guys. I&#039;m checking in with</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Thanks for sharing your AA report, Peg. Steady as she goes. </p>
<p>The kyphoplasty seems to be a procedure that's being used ever more frequently, doubtless because it is plainly very successful and many cancer patients are deriving a lot of benefit from it. Good luck for mid-May and please keep us posted on your continuing success.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Thu, 11 Apr 2013 07:09:16 +0000Texas_wedgecomment 1357743 at http://csn.cancer.orgHi guys. I'm checking in withhttp://csn.cancer.org/comment/1357729#comment-1357729
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1326185#comment-1326185">Fantastic</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hi guys. I'm checking in with the latest CT and scan results. Almost 9 months into my clinical trial for non clear cell RCC and still showing stability, so I'm lovin my Avastin&amp; Afinitor. In late February Lovaza was added to my meds to control triglycerides, which had jumped to over 300 ( totally normal pretrial) and they are back to normal now. My cholesterol had also risen and Lovaza seems to have brought that down too. Got a cardiologist onboard since an oddball episode of tachycardia (fast heartbeat) that lasted about 30 minutes. Tests came back negative.</p>
<p>The compression fracture of the L1 vertebrae (brought on by IGT radiation 16 months ago that killed a small met but subsequently weakened the bones) has gotten a bit worse - still manageable but a constant presence. Saw stars and twisted my back a couple of weeks ago when I slipped off a sidewalk curb, and getting in and out of the car can be a trial. Mid May I'm scheduled to have a kyphoplasty, an out-patient procedure during which a neuroradiologist inserts a needle with a balloon attached at the end into the fracture and injects a cement-like substance to shore it up. It's a relatively new procedure - 5 years or so - done under general anesthesia that has an 80-plus success rate relieving pain among cancer patients (higher in the general population). Doc saiid they are starting to use it more proactively, meaning on patients like me who are not yet in excruciating pain from the fracture, to prevent it from getting worse. I confess I'm not looking forward to it - cement? Really? What could go wrong? Don't ask. And who likes general anesthesia? On the other hand, I'm grateful it's on the table. We do love our options. I'll keep you posted.</p>
<p>Though I have not posted much lately - SO many doctor's appointments &amp; tests, it's been CRAZY, and so often, really, I feel I don't have much to contribute - know that I lurk &amp; I learn &amp; my heart is with you all.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Thu, 11 Apr 2013 06:11:27 +0000I am alivecomment 1357729 at http://csn.cancer.orgFantastichttp://csn.cancer.org/comment/1326185#comment-1326185
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<p><em>In reply to <a href="http://csn.cancer.org/comment/1325896#comment-1325896">Chromophobe</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Anytime "continued diminishment" and "stability" show up in the same sentence - YES!!!! So pleased for you Peg. Momentum is on your side. Keep doing what you're doing so the trial can keep doing what it's doing. </p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/196116%23comment-form">Log in</a> or <a href="/user/register?destination=node/196116%23comment-form">register</a> to post comments</span></li>
</ul>Wed, 16 Jan 2013 21:54:07 +0000alice124comment 1326185 at http://csn.cancer.org